How Alfie Dingley's family inspired change
3 min read
The story of Alfie Dingley forced ministers to sit up and take notice. But there is more to do to get the use of medicinal cannabis widely and legally available, writes Lord Bassam
In any campaign there will be heroes (and sometimes villains). If I had to nominate a hero in the campaign to legalise the use of medicinal cannabis it would be just one person – Hannah Deacon.
I’ve known Hannah since she was 11 and a rather shy, retiring but wonderfully good-natured girl. Her family’s campaign to get Alfie Dingley, her son, access to medicinal cannabis to treat his rare form of epilepsy has had her front and centre of its work, even though she has two small children to care for, with help only from the family.
This time last year Hannah and her partner Drew were forced to take Alfie and his sister Annie to Holland for medicinal cannabis treatment as a last resort. Alfie, then aged 6, had been in receipt of treatment to manage his condition and it was failing and damaging his health. Each week he fitted 30 or 40 times a day for 3-4 days. Hannah encouraged by a sympathetic doctor had sought to use medicinal cannabis.
She researched its use in other jurisdictions and desperate, as any mother would be, to find something to help her child, concluded it was worth trying. Supported by her husband Drew and family and friends she started making the case for a special license for Alfie. This fell on deaf ears medically and politically. Hannah wanted at all times to act within the law – it was important to her.
So with money raised by crowd funding, the family went to Holland so he could be prescribed legally. The fits reduced dramatically. The family then took the equally brave decision to return to the UK in February 2018. However, this meant he stopped treatment with 2% THC oil, illegal in the UK. His seizures returned.
By then the campaign to get medicinal cannabis accepted by the health establishment and politicians had moved on. Alfie’s story was put into the public domain with the support of EndOurPain, and pressure was being applied to health and Home Office ministers who hold the key to its use as a legitimate treatment. Doughty peers led by Molly Meacher and Joan Warmsley together with MPs Sir Mike Penning, Crispin Blunt and Jeff Smith and the APPG on Medicinal Cannabis, took the case up to highlight the issue.
Ministers agreed to meet the family and campaigners and hard work behind the scene paid off. Hannah even got the prime minister interested. Nobody in government wanted to see unnecessary suffering continue, she was told. Hannah reminded them publicly that Alfie and other children were not just suffering but faced a life-threatening condition that could be managed if government listened to the evidence.
Thankfully ministers relented as public pressure mounted, though there is more to do to get the use of medicinal cannabis widely and legally available.
Alfie is back at school fit free. On Monday October 22nd campaigners meet to recognise the progress made at a reception in the River Room where the Lords Speaker Norman Fowler will welcome the progress made along with speakers from the MS Society and with Hannah – my campaign hero.
For my part I shall simply enjoy a special moment reflecting on what can be achieved if you connect the right people up and provide the evidence. Much done, more to do.
Lord Bassam is a Labour peer
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